Alexis's Story: Parent's Letter Project Tetrology of fallot- Lexi's mom

My daughter, Alexis, was born May 29, 2002, at my local hospital, and went undiagnosed for Colic until a visit to the local emergency department (ED) at one month of age. The ED doctor that saw her was a friend of mine, and upon his exam he advised that he heard a murmur that should have been closed at this point. He recommended that I set up an appointment with the Children's National cardiology department. At the Annapolis Regional Outpatient Center visit, Susan Cummings, MD, saw my then 7-week-old infant and performed a very extensive check, including an EKG and an echocardiogram. After she carefully reviewed the findings she came into our room and very compassionately explained to me that my baby girl had Tetrology of Fallot and that she would require surgical intervention as soon as possible to repair. She showed me the films and EKG, pointing out the abnormalities.

I have some medical background as a volunteer firefighter/EMT, so I understood everything she explained to me, but still felt like my world was crumbling around me. She sat with me until I could compose myself and answered all of my questions. She gave me multiple numbers to reach her for any further questions. I was then referred to a thoracic surgeon to set up the surgery. He also took the time to talk to me and answer the long list of questions I had prepared for the first of many visits to Children's National. He determined surgery would be scheduled as soon as Alexis reached 10 lbs in weight, and had his office in weekly contact with me until this occurred. Myself, my mother, and a swarm of friends all visited the Blood Donor Center to donate blood for her upcoming surgery, as she would have to be put on the heart-lung bypass machine. We had all the pre-op testing done, and surgery was scheduled for October 22, 2002, at 7:30 am. I can honestly say that turned out to be the longest day of my life!

We arrived at Children's National at 5:30 am, and the waiting began. Unfortunately this turned out to be the day the Beltway Snipers were caught on Route 270, which caused the surgeon and the anesthesiologist to be delayed. My very tired and hungry 4-month-old was not happy! Surgery finally started around 10:30, and my family and I sat in the waiting room. I remember the first time someone came in and asked for Alexis' parents, I thought my heart stopped. I started sobbing uncontrollably. The nurse came running over to me, apologizing for scaring me, she was only there to give me the first of many updates on how surgery was going. After that I spent most of my time pacing the hall, waiting for her to return. I was informed of every step as it occurred.

Almost seven hours later, Alexis' father and I walked into the Pediatric Intensive Care Unit (PICU) to see our baby. They prepared us as much as possible for what we would see, but it still wasn't enough. She took up less than one-third of the bed, the rest was tubes, wires, monitors, IVs, and an oxygen tent. She was swollen and the incision on her chest was exposed. Her father had a very hard time seeing all of this and almost passed out at the sight of it all. He quickly kissed her face and had to leave. To me, all I could do was cry tears of joy, she had made it through, was breathing on her own and her heart was beating on its own unassisted. The surgeon met me at her bedside and told me how well everything went and what I could expect. She was very fortunate, in that she had no damage to her pulmonary valve and only required a small patch. I was even given the left over dacron material that was used to patch the hole in her septum (This is now in a scrapbook I frequently look at).

Alexis was expected to be in the Pediatric Intensive Care Unit (PICU) for seven days with a total hospital stay of 10 to 14 days. The nurse explained what every tube, wire, and monitor was, showed me her log book, and assured me that there would be a nurse at the foot of her bed for her entire stay in the PICU. Alexis is a fighter, and was released from the PICU in four days, and came home from Children's National on day 7 (October 29, 2002). We were seen every two weeks for two months, then monthly, then every six months by Dr. Cummings. At her two-year mark we were told to follow up annually. Alexis is almost eight now, and to look at her you would never know what she went through, though she likes to show off her scar (that she says looks like an exclamation point) and tell whoever listens that Children's National fixed her heart.

Thanks to the wonderful team of doctors and nurses, my little girl is a healthy and happy 7-year-old with no real restrictions on her life. I could never say enough positive things about this phenomenal facility and staff.

Sincerely,

Alexis' mom, Michelle

Treatment Team

Invest in future cures for some of life's most devastating diseases

See other ways to give

Keep in touch with Children's National by signing up for our newsletters.

Sign up now